Wednesday, September 24, 2014

True October

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” Margaret Mead

It’s coming. I’m not talking about Christmas —  even if the ornaments are out already — but the October pink that will soon cover the earth. Trickles of pink already started appearing in August. Within a few years’ time I expect we will see pink streamers competing with the red, white & blue bunting at July 4 festivities.  

Breast Cancer Awareness Month, initiated in l985, is now a commercial mainstay of the cancer scene — the pharmaceutical companies, hospitals, cancer centers and nonprofit organizations that aim to prevent, treat and cure this awful disease. And yes, here we are almost 30 years later, same month, hearing some of the same talk about prevention and early detection. It seems to me that everyone is aware of breast cancer.  Few understand it and even more I think, are afraid of it than ever before.  

Fear doesn’t help. Early on I tried to shrug off my initial, Stage III diagnosis with my oncologist. I wanted not to have cancer. “But this is the good cancer, right?” I asked him. As always, he told served up truth on a platter.

“There are no good cancers.”

Then when my cancer metastasized I was compelled with that same urge. I wanted to know that the metastasis creeping around wasn’t particularly dangerous. Or threatening. Yet. I wanted out of the Stage IV group and into the category of women who die with — not of — breast cancer. 

What can I say.  A metastatic diagnosis temporarily leaves you senseless.

Since those early days, between what I’ve experienced with my disease and seen in the metastatic community, my thoughts and perspective have inevitably changed again. 

From where I’m sitting the pink parade can go on without me. Games can take place. Eventually November will arrive. The issue isn’t whether or not awareness helps but the kind of awareness we need to advocate for, the kind of awareness worth the time you have here on earth. Coping with October is about focus, not on noise or commercialization, but on the very real work that must be done now.
* * *

Almost one third of all women and men diagnosed with early breast cancer — there are approximately 1.6 million new cases a year worldwide*— will go on to develop metastatic disease. Metastatic or Stage IV illness, where cells leave the original tumor and establish new outposts in the skeleton or visceral organs, is not curable. It can be treated in a variety of ways that range from the mildly (expletives deleted) disruptive to a life-long balancing act with chemotherapy and its cumulative, toxic impact. The grim and often-repeated survival statistics are not inspiring nor do they bear repeating. Prognostic stats use information from the past to predict how you will do in the future. But as any oncologist can tell you, you can have five women with biologically similar cancer, they can have the same treatment and you can still have have five completely different outcomes due to the individual characteristics of each women and how her disease reacts to treatment. Treatment fails too many. 

If we are to reach a point where breast cancer is 1) turned into a chronic disease for all subsets, from the seemingly indolent to the shockingly aggressive and 2) treatments are stripped of the toxicity that renders a patient’s quality of life unmanageable then advanced breast cancer must have more research and education. 
Joyce. Part of treatment for
thousands yearly.

Late last week the second international congress on advanced breast cancer  — ABC2 — issued new guidelines on advanced and metastatic disease with an urgent plea for “high-quality research” for this “historically neglected population.” These guidelines bring the best evidence to bear on advanced disease, including the recent trials on everolimus (Afinitor) for hormone-positive metastatic disease and pertuzumab (Perjeta) and trastuzumab emtansine (Kadcycla) for HER2-positive disease. It also details treatment guidelines for hormone positive, triple negative, hormone positive and locally advanced breast cancers (LABC). 

"Advances in survival outcomes for ABC, particularly MBC, have been frustratingly slow," the report notes. "MBC remains a virtually incurable disease and LABC patients vernally have a poor prognosis with a high risk of distinct recurrence." 

The report is significant for many reasons. To reach consensus on anything related to breast cancer treatment in and of itself is remarkable. The international group of health professionals, advocates and researchers is the first to define treatment guidelines and advocate for metastatic disease from a global perspective. The report is clear, distinct
and bold. The guidelines take an additional step and pinpoint where “…research efforts are urgently needed.” They include:

- Patients with metastasis to the liver, pleural cavity or the skin; 
- Men with advanced breast cancer prescribed aromatase inhibitors  (exemestane, letrozole, or anastrozole); 
- Patients with advanced HER2+ disease who relapse shortly after treatment with trastuzumab (Herceptin) and, 
- The role of surgery for the breast tumor when the cancer has already metastasized.

The report also stresses the need for multidisciplinary, international trials and the education of health professionals on the application of the new information, psycho-social support, early palliative care and patient engagement -- all the things empowered patients stress.

In fact the steady work of advocates stressing the unique clinical needs of advanced and metastatic patients shows. The typical scenario is to test new drugs on metastatic patients. Then, once efficacy is established, there is a quick movement to test the treatment in earlier stage patients. While moving trials to treat earlier stages is as it should be, the continued treatment of the metastatic patient with that drug and others is left unclear. "So this is what we plea for, that yes, once you have enough data, move to the early setting, but remain and keep investing some effort in understanding how best to treat the advanced breast cancer patient. They are one third of all breast cancer patients patients and they deserve that," said Professor Fatima Cardoso, lead author and co-chair of the latest guidelines. 

"Emerging drug research and treatment guidelines work hand in hand," said renowned advocate and author Musa Mayer. "As the research discovers new treatments to prolong and improve life for people living with mets, the guidelines help us use the tools we have today as broadly and accurately as possible, clarifying for governments and payers all over the world what resources are basic for optimal care."

I could probably continue to write about all that's contained in this report for the rest of the day. I've read it a few times now and continue to learn more. But I'll close with the thought of "optimal care" for every person diagnosed with breast cancer, from Minneapolis to the Maldives, Tuscaloosa to Tanzania. That is the truth I see in October. The ground swell to bring metastatic breast cancer issues to light is here. Raise your voice. 


The first International Consensus Guidelines Conference on ABC (ABC1) was held in 2011. ABC2, which attracted some 1100 participants from 71 countries, took place last November in Lisbon. The conference was organized by the European School of Oncology (ESO) and the European Society of Molecular Oncology.  A list of participants is available in The Breast. 

1. “Experts issue plea for better research and education for advanced breast cancer,” September 18, 2014 
2.  Annals of Oncology (online) “ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2), September 18, 2014.  Published in The Breast  September 20, 2013. 


The Accidental Amazon said...

Jody, thanks for this, and for all you do. It's wonderful to head off the pink tsunami with a sensible, informational, real post. Most of my cancer patients at work are patients with mets. It sucks. And I still get emotional when I remember finding out from you that you had mets. Mets and the need for more research & more treatment optiions are on my mind every day. That is and will always be part of the true October for me.

Love you. Kathi

Jody said...

The other day I felt empowered reading this report, realizing the amount of work, the reading, the analysis and conversation that went into its preparation. Any woman who feels alone with her cancer really needs to read it and what it represents for the breast cancer movement as whole.

We have to start somewhere in ending advanced and metastatic disease. Seeing this report was my stick in the sand.

Thanks to you for your ongoing friendship and support. TRUE OCTOBER! *cheers*

Much love,

Nancy's Point said...

Hi Jody,
It's funny, just yesterday I posted on my page that I was not going to post/share anything about Pinktober until October. And then I read your terrific piece. But your post isn't really about October at all is it? I am so on board as far as raising our voices and working hard to bring more attention and more research dollars for mets. Count me in. Every day. Thanks for the post. Seeing it made my day. And those new guidelines and that report were great to see. Much love, Nancy

Jody said...


I think it best to take October on offensively:) I thought if I shared these guidelines and all they contain I wouldn't be flipped out by all the inevitable hoopla.

Thanks so much for your vote of support!
Much love,